Caring for Pregnant Women with Rheumatic Heart Disease: A Qualitative Study of Health Service Provider Perspectives

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Abstract
Rheumatic heart disease (RHD) persists in low-middle-income countries and in high-income countries where there are health inequities. RHD in pregnancy (RHD-P) is associated with poorer maternal and perinatal outcomes. Our study examines models of care for women with RHD-P from the perspectives of health care providers. A descriptive qualitative study exploring Australian health professionals’ perspectives of care pathways for women with RHD-P. Thematic analysis of semi-structured interviews with nineteen participants from maternal health and other clinical and non-clinical domains related to RHD-P. A constellation of factors challenged the provision of integrated women-centred care, related to health systems, workforces and culture. Themes that impacted on the provision of quality woman-centred care included conduits of care – helping to break down silos of information, processes and access; ‘layers on layers’ – reflecting the complexity of care issues; and shared understandings – factors that contributed to improved understandings of disease and informed decision-making. Pregnancy for women with RHD provides an opportunity to strengthen health system responses, improve care pathways and address whole-of-life health. To respond effectively, structural and cultural changes are required including enhanced investment in education and capacity building – particularly in maternal health – to support a better informed and skilled workforce. Aboriginal Mothers and Babies programs provide useful exemplars to guide respectful effective models of care for women with RHD, with relevance for non-Indigenous women in high-risk RHD communities. For key goals to be met in the context of RHD, maternal health must be better integrated into RHD strategies and RHD better addressed in maternal health.

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